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Hi I'm new and fed up

Posted , 10 users are following.

heather1979
heather1979

Hi have just joined this forum to hopefully get some help and advice on how to deal with IC/PBS.

I am still having tests on my bladder but my consultant has pretty much said I have IC/PBS . I have been suffering with my bladder since I was 18 and now I'm 39. It has however got so much worse over the past few years and it's now controlling my life.

I feel like I'm going round in circles when speaking to doctor's . I know what causes mine the majority of the time but I don't know how to deal with this .

I would love to hear other people's stories as I feel so alone right now .

Thank you

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39 Replies

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  • jean68130
    jean68130 heather1979

    Edited

    Hi Heather, 8 years ago I was like you and got nowhere with doctor visits - kept giving me antibiotics for months but they did not do the trick. I read that IC does not respond to antibiotics - just a waste of time, money and effort. After much research I read on an American IC site that Aloe Vera is the answer BUT not the usual ones that are freely available. The USA ones cost over 100$ a bottle but I found the same ones are available in the UK at a fraction of the cost - about 14 pounds a bottle. You need to purchase PUKKA WHOLISTIC ALOE VERA CAPSULES - these are freeze dried and contain only the inner leaf. I get mine online from Naturisimo.com with free postage. After a short while of using these together with Serrapeptase every day I was completely free from IC and, finger crossed, remain so. Don't forget that green tea products and cranberry juice are a no no for IC sufferer.

    Good Luck

    Jean X

    • pam47462
      pam47462 jean68130

      Edited

      Hi. I am in the same boat as you got nowhere with doctors so far.  I have a new family dr younger nicer and more eager it seams to help me.   He is trying to get me a new urologist and put me in pain management.   Both sound like great ideas.   I have other posts where I pretty much tried everything there is for IC but there is not much out there.  The only thing I have left if to find dr how give a you know what. Best of luck to you, may I ask what have you tried in the past as far a meds and treatments?
    • jean68130
      jean68130 pam47462

      Posted

      Hi Pam, 8 years ago I was like you and got nowhere with doctor visits - kept giving me antibiotics for months but they did not do the trick. I read that IC does not respond to antibiotics - just a waste of time, money and effort. After much research I read on an American IC site that Aloe Vera is the answer BUT not the usual ones that are freely available. The USA ones cost over 100$ a bottle but I found the same ones are available in the UK at a fraction of the cost - about 14 pounds a bottle. You need to purchase PUKKA WHOLISTIC ALOE VERA CAPSULES - these are freeze dried and contain only the inner leaf. I get mine online from Naturisimo.com with free postage. After a short while of using these together with Serrapeptase every day I was completely free from IC and, finger crossed, remain so. Don't forget that green tea products and cranberry juice are a no no for IC sufferer.

      Good Luck

      ?Jean X

    • jean68130
      jean68130 heather1979

      Posted

      Sorry for delay in replying. Serrapeptase digests inflammations, scars (non-living tissue), blood clots, cysts, arterial plaque, and inflammation in all forms. Serrapeptase is an enzyme and made from the bacteria in the silkworm and is wonderful for inflammation - some people swear by it after surgery as it helps to heal quickly AND perfect for IC sufferers. Well worth looking it up on the internet to read just what it is good for.

      JeanX

  • heather1979
    heather1979

    Posted

    Thank you so much to everyone who has replied I feel like I'm the only one but it seams I am not .

    mine started as a late teen with constant cystitis . I suffer with IBS and have a back problem so have to take morphine which doesn't help .

    Mine will come on with stress or if I eat alot of sugary foods . The main trigger and it's guaranteed to give me the worst flare up ever is .......sex !!!!! Anyone else have this ?

    Every single time with a shadow of a doubt I will get a horrendous flare up which will make me incontinent and in agony . I'm often sat crying in the toilet at work because of the pain . I've tried all the different little tactics they suggest with having sex and it makes no difference. Sex itself is painful and it's difficult as I'm in a relatively new relationship.

    I'm on solfenacin at the moment , I take ibuprofen or naproxen for the pain . Last night I took amytryptaline which helped but made me groggy this morning .

    I've had a cystoscopy , urether stretch , CT bladder scan , ultra sound scan and now waiting for another cystoscopy , biopsy and the test where they fill your bladder up to the max . I do have a kidney stone also .

    So from the replies I believe I should try -

    Probiotics - is this in the small drink formular?

    Marshmallow root - what is this ?

    And aloe Vera - PUKKA WHOLISTIC ALOE VERA CAPSULES -

    Thank you thank you in advance

  • sandy43858
    sandy43858 heather1979

    Posted

    Hi Heather you are not alone. I've been with my partner for 5 years and it's become painful to have sex. I find if painful when we start and also during sex. I have a routine...if I feel ok I have a cold shower...take a d mannose and after sex. After we have finished I have another cold shower..... (I think I might be the cleanist person in the world smile....i take pro culture pro biotics. It helps with a healthy gut. Sometimes when you get a UTI the main cause can be e.coli bacteria that lives in your gut. I buy mine from amazing for 15 pounds and lasts 6 months. I haven't used aleo Vera but hear that it helps. I've also ordered marshamllow root from Amazon. It's suppose to help with the burning feeling.

    • heather1979
      heather1979 sandy43858

      Posted

      Hi sandy

      Do you suffer with horrendous flare ups after sex say for a week or so ?

      What does the cold shower do ?

      What's a d mannose ?

      Sorry for all the questions I just can't get answers from any medical professional and it's making me depressed . I feel like some kind of freak . I can't hold my bladder when it's really bad so I will leak but then get that unbelievable burning feeling so my face goes read and eyes water . I must look like such an idiot !

    • sandy43858
      sandy43858 heather1979

      Posted

      Hi Heather. I normally get a flare for a couple of days but sex itself is painful. My GP has referred me to get a scan of my ovaries. My symptoms seem to get worse around my period. Sometimes I'm actually grateful for my period pains.....how sad is that.

      The cold shower just helps to calm the inflammation before sex. There s no other reason to be honest.

    • pam47462
      pam47462 sandy43858

      Posted

      Hi Heather I have to agree with you this has to be the worst condition to have, may I ask what PBS stand for? I have IC what would make this problem easier is if I could find a caring urologist that had a magic cure for this.  Good luck to you and all the best I hope we all feel better really soon.
    • melissa11857
      melissa11857 pam47462

      Posted

      Hi Pam, 

      I was wondering how long you’ve had this and what tests you have gone through? 

      I went through so many urologists, and was told constantly that there is nothing wrong and it’s something I will just have to live with. 

      I finally have a urologist that gets it and cares and I genuinely feel like I might be on my way to being cured.. don’t want to jinx it 

    • pam47462
      pam47462 melissa11857

      Posted

      Hi Melissa, I have had two urologists both did cystascopes and that show some raw bloody areas.  Both said it could have been caused by infection.   Both said there is nothing else wrong but mentioned I could have IC and put me on DMCO installations.  They do very little for me and take elmiron and some antispasm drugs other than that that I take pain meds that hardly help.   I so wish my new urologist when I get one will have my bladder taken out its been 7 months of hell.  I wish you the best of luck.
    • heather1979
      heather1979 pam47462

      Posted

      Hi Pam

      PBS stands for painful bladder syndrome it's just another name for intersitial cystitis. I'm afraid from what I've found out there is no cure and it's a really hard problem to treat .

      I'm going to try some marshmallow root but don't know if tea form is better than capsule .

    • pam47462
      pam47462 heather1979

      Posted

      Thanks for the info Heather, sorry don't know anything about mqrshmallow tea or capsules the only tea I drink is chamomile with lavender to help me relax.   Maybe someone else has some ideas on it, I would not mind knowing.   Has your doctor have you on any treatments or medications?

    • sandy43858
      sandy43858 heather1979

      Posted

      Hi Heather and Pam.

      I ordered some mashmellow root on Amazon. For around 9 pounds. I've read in a couple of articles that women have said it helps with the burning sensation. If you go on amazon and type in marshamllow root tablets...read the reviews but IC patients. I've never tried it before but I'm looking forward to using them. I also brought some organic turmeric from the shops. It helps with inflammation. Today I ate a green Apple!! Don't know about you but it didn't agree with me.

    • pam47462
      pam47462 sandy43858

      Posted

      Thanks for the info Sandy,  I am on so many pills right now I think I will have to wait awhile to try anything new.  As for green apple because they are so sour I thought they were a no,no.  I purchased prelief from amazon, maybe try that see if will help with the upset.

    • sandy43858
      sandy43858 pam47462

      Posted

      Hi Pam. Yes don't eat them. I have learnt over the last couple of weeks that no matter how much pain I am in I am going to try my best to remain positive. I'm going to enjoy each day as it comes. I think we sometimes start to focus on all the negatively which doesn't help and just makes me depressed. If my worse case scenario is to have my bladder removed then that's what I will have to do. Stay positive. Go for walks and do some mediaition. smile

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